Bo was born on 6/3/07 with the rare congenital disorder currently known as Microvillous (Microvillus) Inclusion Disease. It took 2 hospitals and 5 weeks to diagnose. He became the 61st baby in the US to receive Omegaven. His nutrition is 100% TPN/Omegaven. We believe there will be a cure for this in our lifetime, and that a transplant is NOT the best option for this disease. This is our story.
Wednesday, July 8, 2009
Quiet = Good
I'm still digesting and savoring the sweet Oley week we had. I'll post my minutes here in a formal blog in the next week or so. Let me just say, that I had a weirdly resonant moment when someone asked me if I learned alot, and what. I flashed back to a job interview for a project manager position and one of the team members asked me what the most important time in a meeting was. Even though I had never been a PM, I instinctively said the gathering and commencement moments before and after the formal meeting, "That's where you hear the most important information, see the most important interactions (verbally and in body language), and sense the life of the project." Still true.
Spending time with the Cyrs, the Brogans, the Nobles and all the amazing long-timers both young and old was uplifting. I nearly cried into the lap of a younger hipster with a G-tube. He was so self-sufficient, so matter of fact, so aloof, yet so compassionate. Someone I hope Bo will be able to look up to for a long time.
Rennie and Jennie kept Bo amused so I could attack multiple sessions each day. And even though it poured rain every day but the last, with threats of hurricanes, and even though we ate way more hotel food than I had hoped, we all had an amazing time. Bo was already aware that the other attendees had lines of their own. He pointed to his line and showed it off to a 15 year old, who in turn, showed Bo his line. So he had no interest in the daycare (too young for it to be amusing for long)? He had fun chasing Rennie and Jennie. He slept through the night each night, took nice naps daily and only cried for a few minutes for each airplane's descent. Good Boy!
Summer ramp up has kept us busy. 4th weekend with my parents, this weekend is my niece's 3rd birthday and family from Detroit and NY are visiting here, Bo's godmother and her husband will breeze by the following week (which will be a grueling combination of kowtowing and chauffering our Japanese agent and customers), and the following week is a Childs'pace workshop in Chicago. Whew! It'll practically be August by then. Where did the summer go?!
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